kayray.org

The new offering from the creators of Serial:

https://stownpodcast.org

If I mention it here, you know it’s good.

Uptravi isn’t working for me. I’m frustrated and sad. After all those months (Mar-Oct) of pain and suffering in 2016 to get up to the highest dose I had maybe three good months (Nov-Jan) and then I started to go swiftly downhill again. My tests in Feb came back pretty bad, and my shortness of breath (SOB) is much worse lately. During those three good Uptravi months I turned my nighttime o2 down to 2 lpm and I barely needed oxygen in the daytime at all. Now I’ve had to turn my o2 up to 4 lpm and use it a lot in the daytime as well. Meanwhile I still have constant unpleasant painful side effects.

The only remaining (last resort) therapy for PAH is infused drugs, which means wearing an infusion pump 24 hours a day forever. This freaks me out and I’ve been avoiding it for 14 years by the lucky timing of a brand-new drug being made available just when I needed stronger therapy (Tyvaso, then Uptravi). But this time there’s nothing new available or coming in the near future.

I’ll be going on Remodulin (which spellcheck changes to “remodeling” every single time). http://remodulin.com/

My doc is pushing IV infusion but I’m insisting on subcutaneous (SQ) for a variety of reasons. Smaller pump, no hospital stay to get started, less risk of infection, no risk of blood clots and stroke, less danger in general. The drawback is several days of severe pain cause by the irritation of the medication where it enters the body under the skin. This, they say, lasts up to a week after you start a new infusion site, and you need to start a new infusion site every six weeks or so, generally. (This seems to vary wildly from patient to patient, as does the severity and duration of infusion site pain.)

So this sucks.

I’m clinging to the very real possibility that Remodulin might make me feel and breathe better in spite of the pain and annoyance.

They made me go up to UCSF Medical Center to talk with a social worker for a couple of hours on Friday, and now we wait insurance to approve my new meds, and then they will try to talk me into an IV catheter again, and then I will insist on SQ infusion because I am a Difficult Patient, and then the specialty pharmacy will send a homecare nurse to train me how to deal with these new meds — pump and catheter and everything. Ugh. I wish they’d just give me an instruction manual.